The emergence of healthcare ethics as a discipline in India reflects the growing awareness and concern for ethics in the medical profession, academic institutions and the public. Bioethics, which covers a larger area than medical ethics, was the subject of the first national conference on this subject held late last year in Mumbai. A report on the conference and the spread of this important area of study and concern.
By Sandhya Srinivasan, Sanjay A Pai
Healthcare ethics is emerging as an important discipline in India. It is no longer only the concern of a small group of doctors but is a concern that many are willing to contribute to. This seemed obvious to the organisers and the delegates of the first national bioethics conference, which was held in Mumbai from November 25 to 27, 2005. The high turnout (over 350 participants from all over India with a sprinkling from Pakistan, Bangladesh, Sri Lanka, Australia, Canada, the US and Norway) for this meeting, with over 60 papers presented, of relatively good quality, augurs well for physicians, researchers and, most of all, for those who are most affected – patients. The conference was held under the umbrella of the Indian Journal of Medical Ethics (IJME). It was organised by 20 collaborating organisations.1
Delegates at the meeting included physicians, students of medicine, philosophy and ethics, social scientists and activists. The topics discussed at the conference were thus wide ranging. Some discussions were on the more traditional debates in medical ethics in India such as papers which looked at how end-of-life issues were dealt with in India. The transplant coordinator of a private hospital described the medical and legal dilemmas of approaching a potential donor’s family for a cadaveric organ donation. Doctors from a municipal hospital in Mumbai described the socio-economic backgrounds of patients seeking care for renal failure, and the choices they must make. There were papers on sex selection and the medical profession, on assisted reproductive technologies, clinical trials, informed consent, and so on.
However, there were also subjects that some medical doctors may see as remote from ethics training. For example, what are health professionals’ duties when treating women who have suffered domestic violence? Should they receive special training to deal with such situations? What are the researchers’ responsibilities when doing research in this subject and do these end when they leave the field? What role have doctors played in collecting evidence when women have suffered a sexual assault? There were many sessions in which participants could discuss their work within the “larger picture”, such as the session on ethical concerns during disaster relief and research in such situations, including whether people in such situations could give their voluntary informed consent to participate in research.
Research in HIV/AIDS
Ethical questions related to treatment of and research in HIV/AIDS were prominent in the three-day meeting. A number of keynote speakers mentioned the limited access to care, especially for women, the problems of stigma and discrimination, and the role played by health professionals in making AIDS more than just another sexually transmitted infection. Another extensively discussed subject was the need for community involvement in research, through community advisory boards. This was a timely discussion, coming shortly before the announcement that phase 1 trials of an HIV vaccine near Pune have been completed. Also, a second vaccine is due to start trials in Chennai.
Among the themes in keynote addresses was the role of physicians and their work in a globalising world. V I Mathan from the Christian Medical College and Hospital, Vellore, spoke of how healthcare has moved from a vocation to an industry. This change in attitude is certainly related to privatisation of healthcare services in India. Not only is ethics education absent in most medical college curricula, as pointed out by Sunil Pandya, founding editor and emeritus editor of IJME, but full-time medical teachers in the colleges run by the Brihanmumbai Municipal Corporation are now permitted private practice, which often interferes with their teaching and clinical work and also sets a poor example for students, the next generation of medical professionals, to follow. In this scenario, one of the speakers cautioned that ethical discussions may be seen as a surrogate technique to protect physicians from legal liability rather than promote the spirit of ethical practice.
At one level, the conference was a milestone for IJME, a journal started in response to widespread corruption in the practice of medicine. Started as a newsletter in 1993, it is now a peer-reviewed and indexed journal reaching out to and linking healthcare professionals, researchers, students, policy-makers and the lay public. The growth of IJME coincides with the emergence of healthcare ethics as a discipline in India and the growing awareness and concern for ethics in the health professions, in academic institutions and elsewhere.
The advance of ethics discussions in India has had multiple influences. As is pointed out in the national bioethics conference concept note, “The development of bioethics in India over the past three decades is the product of a number of pressures. The failure of political commitment to universal healthcare led to the creation of the voluntary community health movement critiquing the bureaucratisation of healthcare. The increase in private healthcare – and its subsequent commercialisation – and the struggle for patients’ and consumers’ rights brought issues of medical malpractice to the fore. The movement for rational therapeutics and drug price controls examined the pharmaceutical industry’s influence on prescription practices of doctors. Finally, one of the strongest voices during these times has been that of the women’s movement, which exposed the politics of population control and ethical violations in contraceptive trials.”2 All these in turn have found a voice in the journal.
These years have also seen shifts in focus, and the development of new areas of interest. As George Thomas, the editor of the journal, notes, “An example of a new problem is the ethical dilemmas associated with assisted reproduction. An example of an old problem that is still very much with us is the question of the egalitarian distribution of healthcare resources. Both these issues have been addressed in the pages of the journal.”3
Spread of Discussion A major difference over the years is that discussion on ethics is no longer restricted to a minority of “good doctors”. It used to be difficult to get healthcare professionals to write on ethics. Today the journal’s editors are finding it difficult to process submissions, especially to ensure that all articles are submitted to peer review.
Second, in its initial years the journal necessarily focused on issues such as corruption, the need for professional behaviour – in essence, rules of good practice because of the dominance of hospital-based clinicians or consultants in the field. While these remain relevant, articles are more likely to also examine the social context in which healthcare is provided, in which medical professionals practise. Some have tried to articulate the tensions of practising medicine among poor communities, the impact of health policy and the behaviour of institutions and institutional heads on the practice of individuals. They look at malpractice in the context of privatisation. They describe the medical professionals’ responsibilities during a disaster where they may be forced to provide treatment with limited resources, to choose between patients, to recognise and deal with caste and communal tensions within relief programmes. They have noted the growing divisions within the medical profession on communal lines, as political and religious affiliations override the fraternity of doctors.
Third, in earlier days the contributors to the journal were a small group of medical professionals, either its own editorial board or senior professionals, who spoke out against corrupt practices among their fraternity, and who served to some extent as the role models not visible in medical schools. Such articles continue to be important today, but there has also been a conscious effort to attract others. And a number of particularly interesting pieces in recent years have come from medical students, recent graduates and others who do not write frequently. These include narratives from health professionals on “the view from the other side”, experiences in practice and research which are presented for general discussion, and even an anonymous report of sexual harassment in a medical college.
Some articles reflect the editors’ recognition of the need to include the voices of patients and their relatives. For example, recently, the journal published the account of an adult-to-adult live liver transplant in a private hospital, in which the recipient died and the donor is in a persistent vegetative state. This, and the hospital’s response (also published), raised a number of important questions about high-technology private healthcare in India today.
Such anecdotes are valuable in themselves, as the voices of people in healthcare. They can also become the basis for more formal thinking and writing on ethics of healthcare.
Further, by encouraging debates on controversial issues such as whether doctors should advertise, the right to refuse treatment, ethics of sex selection, and so on, the journal has tried to draw people from different perspectives. One reason for this approach was the perception that the journal might be alienated from the concerns of practising physicians today.
Multidisciplinary Approach Another relatively new area within the journal has been reflections and discussions on social science research, reflecting the trend to have a multidisciplinary approach to ethics discussions. Today, contributors to the journal include researchers, counsellors and even patients. This growth was recognised at the national bioethics conference where plenary speakers included senior social scientists and the inaugural speech was given by the president of the network of positive women.
We suggest that this expansion in the journal’s scope is linked with the parallel growth in interest in healthcare ethics. This interest was evident in the composition of the conference’s organising committee (OC) and the list of collaborating organisations. The OC includes government, non-government and private institutions working in both medical education and care and the social sciences. In addition to the traditional medical professionals and activists, there are social science and biomedical researchers, legal professionals, philosophers, and people concerned with health policy. We hope this will lead to a body of work from India – empirical research as well as theoretical reflections by writers from this part of the world, and based on locally relevant issues.
At the same time, there may be new issues to consider. One of these is the emergence of a group of people whose profession is ethics. As has been pointed out earlier in this article, the ethics movement in India has developed from the pressures of consumer movements, women’s groups and other activist organisations. What are the potential benefits and pitfalls of the entrance of a new breed of “ethics professionals”? Will professionalising ethics “take the sting out of it”? Is there a danger of becoming divorced from the movements which gave rise to ethics discussions in India? It may also be that such professionalisation is necessary to sustain and build discussion – we are aware of the tremendous difficulties of sustaining the journal’s production through voluntary work alone. Can we depend on activists in India to keep ethics discussions rooted in our realities? Such questions must be asked as the journal becomes more established.
One might also ask about the introduction of the word “bioethics” into the journal’s vocabulary. While readers of the journal may have taken the words “medical ethics” for granted, the word “bioethics” may be more difficult to understand, though it has been used in the journal periodically. The obvious reason is the journal’s roots in medical ethics – a discussion between medical professionals with the relatively limited involvement of non-doctors. Bioethics can be seen as wider in scope, to include for example questions on animal experimentation. It also specifically includes academic discussion from perspectives outside medicine, such as theology, philosophy and law. Indeed, many articles in the journal discuss the wider context in which medicine is practised, and also discuss these from other specialised, non-medical perspectives. However, there is a need to clearly articulate the links between these different ideas in the journal.
Conclusion Tentative answers to such questions may begin to emerge over the next few months. But there is no doubt about the need for discussions, both on healthcare ethics and how it can go forward. In the days immediately preceding the conference, newspapers carried reports of stem cell therapy in Delhi clinics – the procedure has grown without regulation or guidelines in India, and there is a real danger that people in this country will be guinea-pigs for all sorts of unproven therapies. And during the conference we heard that researchers at the Regional Cancer Centre in Thiruvanthapuram actually won an international award for a controversial study conducted in 2000-01 in which cancer patients were given experimental drugs without their consent. Yet another article documented the new trend of Indians going to Pakistan for paid kidney transplants, because there is no law there banning paid transplants. Can we hope for a change by the time the next national bioethics conference takes place in 2007?
1 Tata Institute of Social Sciences, Mumbai; Sree Chitra Tirunal Institute of Medical Sciences and Technology, Thiruvananthapuram; SAMA, New Delhi; National AIDS Research Institute, Pune; MASUM, Pune; LOCOST, Vadodara; Lokmanya Tilak Medical College and Municipal General Hospital, Mumbai; KEM Hospital/Seth G S Medical College, Mumbai; Jaslok Hospital, Mumbai; Institute of Legal Medicine, Chennai; Independent Ethics Committee, Mumbai; Gujarat Institute for Development Research, Ahmedabad; Forum for Medical Ethics Society, Mumbai; Christian Medical College, Vellore; Centre for Enquiry into Health and Allied Themes, Mumbai; Centre for Studies in Ethics and Rights, Mumbai; Bioethics Project, Bangalore; All India Institute of Medical Sciences, New Delhi; Centre for Women's Development Studies, New Delhi; Association for Consumer Action on Health and Safety, Mumbai. 2 Organising Committee, 'Concept Note', Indian Journal of Medical Ethics, 2005; 3 (Supplement): S7-S9. 3 Thomas George, 'Achievements and Opportunities', Indian Journal of Medical Ethics, 2005; 3 (Supplement): S3.